Can I ask - would you go for diagnosis for suspected high functioning autism?

[AquaBlueBlack]

School (teachers, Senco and external support), DH and I are all similar in our thinking that ds has high functioning autism. He is functioning well academically, struggles socially and school are putting in place support to help him in the school where he struggles the most. At home he genrally is wonderful, though we do recognise the issues in social/ group situations but we support him through these. We are now being asked about pursuing a diagnosis. I am really in two minds about this but can't pinpoint why. AIBU to feel this may not be the best route and focus on strategies to support him is more important? any advice?

[ILoveACornishPasty]

He isn't social-that was always the issue. Intelligent, yes, but no concept of how (or why!) to interact, can struggle to identify emotions or recognise them in others, couldn't cope with any sort of altercation to plans or schedules-very long list, very well managed. I agree he is not at the severe end of the spectrum and it's hard to get it in print but we know, and both schools and the ed psych have been clear, that hfa would be the most likely diagnosis.

[DrunkenUnicorn]

We are in the same position as previous poster.

Ds is 12. I had concerns about him from about age 3. His previous primary schools 'kept an eye on him'. He is incredibly academically able, but terribly socially always, very set in his ways about how things 'are', change of routine upsets him etc. But he manages to have a small group of friends who he gets on reasonably well with.


After discussion with ed psych who said there wasn't much they would be doing now even with dx we decided against Proceeding with dx.

He passed his 11+ and is doing v well at grammar school now. He still finds new situations or social situations with people he doesn't know difficult but he is doing well

[Dawndonnaagain]

I'm part of a diagnostic team on occasion. We're still using Asperger Syndrome in this part of the world.
I would say go for it, and to those who have currently chosen not to, I would suggest considering, even if it's just for extra time in exams. 25% is standard and it can make a huge difference, not just to grades but to the emotional wellbeing of the student too.

[ILoveACornishPasty]

I suppose that's the thing. If I could see a reason he needed it, anything that a diagnosis would offer that he needs and doesn't have already then I would go for it. Teachers, the ed psych etc can offer nothing more-they are fabulously supportive anyway. My son doesn't need extra exam time-if he were behind in school or failing then I'd agree it's a reason but he isn't-maths tests are up there with his favourite things to do! I can absolutely see how it's the right thing to do for a lot of people but I also wanted to put our experience out there as the other side of a very complicated and subjective discussion.

[BarbarianMum]

I guess I was thinking more about Higher education. My friend works part time at the local university, she's employed to support students with additional needs. For some that's just scribing, but last year she worked with a young woman with HFA, helping her to organise her timetable, accompanying her to the library until she became comfortable to access it independently and sitting with her during free periods/lunch, or running errands with her. The service that employs her is specifically for disabled students, so I guess you'd need a diagnosed disability to access it.

[fedupoffeckingschool]

Yes get a diagnosis, my son was diagnosed aged 13 after 2 years trying to get help, he totally fell apart aged 11 at high school, it was a teacher that suggested he gets accessed I hadn't heard of autism at the time, my son is doing well now aged 15 with help & support from a hospital school, he has communication problems, we had to fight/appeal still to get him help, good luck as it won't be easy but definitely worth doing

[elliejjtiny]

Yes. DS1 is 9 and diagnosis has made a huge difference to him.

[Youarentkiddingme]

Oh yeah the not a sobbing mess so they are fine line.

Interestingly I got told similar in a meeting last Thursday. Then on Monday DS friend (a very lovely girl who gets him and he's a totally different child around) asks me if when she hugged DS the previous week because he was crying is it because he has autism and doesn't like to be touched.

If a 12yo can get it why can't an apparently expert in ASD adult? And why because the school doesn't see things do they assume they don't happen?

We just bumped into one of DS old TAs from juniors in supermarket. Even she said he's gone back to being very withdrawn and anxious - is everything ok?

[bumbleymummy]

I think it really depends. How exactly does he struggle socially? Do you think it is something he may find easier as time goes on and he gets used to different situations? Some people might think my DS isn't particularly social in school but he's actually just a bit introverted, gets on well with a small group of friends and is happy enough playing on his own sometimes because he likes it. It's just his personality.

I think I'm with ILove on this. If he's happy and it's not causing any problems then is it necessary?

[LauraMipsum]

I'm in the process of seeking a diagnosis as an adult. I'm 35 and while I'm high functioning, my anxiety and all round MH are suffering from performing from someone else's half-written script all day every day. If AS had existed as a diagnosis when I was a child I think it would have been extremely useful.

[StatisticallyChallenged]

I also wish I'd been diagnosed younger. I've basically found that as I've worked my way up from primary to secondary to uni and then through increasingly senior jobs I've become less and less able to hide it. I could "pass" when I did a fairly repetitive call centre job whilst at uni where the job itself wasn't challenging and I was smart enough to learn the "rules" - literally like following a script. But as I've got in to jobs which are more varied and challenging then the situations you deal with day to day vary much more and suddenly you can't hide it.

[Dawndonnaagain]

Polter, tackle it with the school to start with, he should be offered 25% extra time for processing questions, for writing difficulties (very common) and for 'head to pen' time, again, very common. He should be allowed a room on his own if he chooses, many students find the even the scratching of a pen difficult, add to that coughing, sniffing, fidgeting, different smells, different lighting all on top of exam pressures and it all becomes overwhelming. The lighting should not be distracting, e.g. fluorescent, and many students prefer either no windows or at least no windows in their sight line. If the school aren't forthcoming, then inform the senco that you wish to pursue things. They have to do it. You may be required to provide an official confirmation of diagnosis or a letter from your GP stating that your DS needs these things in place.

[imip]

Like many pp, I have a dd7 who was recently diagnosed with ASD (just ASD, but only ASD is diagnosed here -no AS, no HFA - she's demand avoidant, but fits all the criteria for PDA, PDA not an official diagnosis as it doesn't exist, maybe in DSM6

Much more like a girl with HFA, did looks 'fine' at school (except she's not, school observation shows constant signs of anxiety). School picked up on nothing, saying she only showed signs of anxiety in my presence .

At its very worst, did has self harmed (she was 6yo). Cutting herself with a paper clip, pizza wheel. She eye gouges, and as mentioned above, pulls out her hair. She did this in the school yard last week at drop off. She normally holds it in at school, but I see the potential for did to begin being able to lose the 'mask' at school.

For this reason along, I would pursue a diagnosis. I think I missed your ds age, but just because it may all be ok now, doesn't mean it will be in the future. Having a diagnosis has also allowed me to think about it more throughly and analytically. Up til now I've been focussed on getting dd's diagnosis (took just over 2 years), now I can focus on means urges to really help her and understand autism more as well

[imip]

I'm quite glad the aspergers diagnosis is being withdrawn in many areas.dd would have had AS, as she was speaking at 3yo. However, it feels like AS is viewed as being 'milder'. Dd self harming at 6yo is far from 'mild'. I feel like poster that AS is sometimes just viewed as being 'clever and quirky'. I especially feel this from the school, who've frankly been bloody shit!

[Kleinzeit]

Yes, do it. It is great that he is functioning well academically and that the school are putting support in place now. But that’s now the diagnosis is the path to getting support in future. As he grows up you wont be there to support him in social situations and he will need to understand his own condition and learn to manage himself independently. The diagnosis is a path to that too.

There are huge variations between individuals with the same diagnosis. My DS has met lots of kids with Asperger’s and HFA diagnoses and he has commented to me that some of them are exact opposites to him – he is intense, organised and with an excellent memory; another kid may be vague, disorganised and forgetful. Autism can mean patches of high ability right next to patches of profound disability in what seem like very similar skills. The child-psych jokingly commented that Asperger’s is a thing of extremes – an Aspie kid will either have the perfect tidy desk with everything lined up or it will be a bombsite. And other personality factors make a big difference too, like whether someone is an externaliser (tends to blame other people or hit out under stress) or an internaliser (tends to withdraw or self-punish under stress).

You don’t say how old he is – I am guessing he is not yet a teenager?
If he’s still primary age then the transition to secondary may be a game-changer because many kids who cope in the sheltered primary world crash and burn in the much more independent and change-filled world of secondary school. And then there’s university, and then work. There’s practical and social support for students with ASCs (not just extra exam time) but he’ll need a diagnosis to get it. My DS has put his Asperger’s diagnosis on his UCAS form. He hasn’t asked for any special allowances but if anything goes wrong then he’ll be in a better position to get help. And it hasn't affected his offers.

Schools don’t always give the best advice about diagnosis because they have different priorities. Their priority is academic performance and behaviour in school, getting support for the kids who need for academic reasons or to avoid disruption in school, and getting the child into whatever the next step after school may be. But social life out of school, and whether a youngster makes a success of whatever they do after they leave that school, that’s not really the school’s concern. The diagnosis might also be the path to support out of school, such as specialist social-skills and friendship support groups, though different areas vary in what's available.

One thing to avoid is a kid who copes without diagnosis at primary school age but finds they can’t cope with the different pressures of adolescence. Because then you have the trauma of diagnosis on top of all the self-image issues that go with the adolescent wish to “fit in” and be “normal”. So I’d get it over and done with before that if possible!

[bumbleymummy]

Poltergoose, I'm by no means suggesting that autism = introversion. The OP didn't really give much information about how her child is struggling socially so I was just pointing out that at one end you can have a child who is introverted and not that interested in socialising but it isn't necessarily a problem but at the other end there are children genuinely struggling socially with anxiety issues etc. In the latter cases, yes, a diagnosis would help. So, as I said, it just depends on how much he is struggling and what with exactly.

MaryZ, I take your point that we can't guarantee what the future will hold for our children. Re why assessment is being suggested - I do think that sometimes teachers can be a bit quick to suggest something like ASD simply because a child is having some problems or because they are a bit 'different'. In our case, DS was struggling to settle in to a new school and was being bullied but one teacher kept insisting that he should be assessed for ASD. Once the bullying was dealt with, the behaviour issues went away. I know that isn't the case here but I'm just pointing out that sometimes assessment can be suggested for the wrong reasons.

I actually think there is pressure to 'fit in' and 'be normal' much earlier than adolescence. It's very sad to see young children feeling under pressure to change their interests and behaviour to fit in with others in their class :(

[Kleinzeit]

Yes, there is always external pressure to “fit in” and be “normal”. My point is different - it's about the internal wish to “be normal” and “fit in” which often gets a lot stronger in adolescence. A younger child may be more open to going through the assessment process and to accepting the diagnosis. Adolescents can get more stroppy and/or distressed about it!

[AquaBlueBlack]

Thanks all, he is 5 btw.

[imip]

Our experience has been that as dd has got older, she has stood out more from her peers. We've noticed this socially. She is very popular, but now as her peers all start turning 8, she really isn't getting the nuances of friendships.

She is also standing out more physically, with her flapping etc. and she is very very high functioning in the sense that everyone through I was completely neurotic in seeking a diagnosis.

She is certainly standing out in terms of language as she often does a baby voice (typical of girls with autism) and pips and squeaks when anxious.

[Kleinzeit]

I do think that sometimes teachers can be a bit quick to suggest something like ASD

Sometimes they can but aqua agrees with the school so the question is not at all about whether he has an ASC; the question is only about whether if someone has an ASC they should get a formal diagnosis. In my view “they’re getting support right now so it doesn’t matter” would be short sighted, whether that comes from a parent or a professional. aqua's school are trying to do the right thing, they will be thinking about the support her DS is likely to need in future, perhaps in the quite-near future. Support can easily be withdrawn when a child appears to be doing well and without a diagnosis it's harder to justify continuing. He is still young aqua so if you really disagree with the school you could wait and see - but I would just go for it.